It’s Already December

It’s hard to believe it’s already December! My surgery already seems so long ago. Before surgery the only holiday I could even think of at all was Thanksgiving. Actually, it was hard to think of anything other than the surgery itself, especially after the date was set. So needless to say, as I have been for the past week, It’s already December and I’m not the least bit prepared for Christmas. I’ve always been one to do last minute shopping and be rushed the closer it gets, but this is a new level of being unprepared. I have to just keep reminding myself that the day will come and go. I will see my kids and grandchildren and extended family, and it will end with great memories to cherish.

As for my surgery and recovery, that’s going great. Sorry if this is gross to read. I’m just sharing details and things I would be curious about. The last little bit of that slow healing scab came off yesterday. I’m so thankful! Every other part of the surgical scar is fully healed pink skin. It is the very top neck stitch that has been so slow. It’s now almost fully healed with the white that is still slightly visible turning pink as it closes completely. It’s about time! For the last couple of weeks this has been the most frustrating thing to deal with. My range of motion is going great, but has been hindered by this because it feels like I’m stretching it when I turn either way too far, and I’ve been worried about infection. It’s hard for me to see in the mirror so my husband has been taking pictures to show me. Until a couple of days ago I thought it was much larger than it actually is. I wasn’t taking into account that he was zooming in. The first time I really got a good look at it is when he held a mirror up close behind me and I had a handheld mirror to look at it. I asked astonished, “That’s it”? It looked so small. That helped a lot mentally because there I was thinking this thing was much larger than it actually is. It still itches like crazy and my skin is red from the adhesive on the Band-Aids Tony puts on after cleaning it twice daily. He started cutting most of the adhesiveoff and that helps. I’ll probably only keep it covered a couple more days now that the last little piece of scab came off and it’s closing nicely. By that time I’ll feel confident it’s healed to the point of infection not being a risk.

I want to share with you what I’m experiencing post surgery. First, I want to say I don’t have any clinical data to show as proof at this time. I don’t know if it will stop where it is, continue to improve, or if or when it will start declining again. I’m choosing to share this because so many people have asked and this particular experience is so important to me.

If you have followed my blog for a while, you know my son, Tyler, is deaf and we communicate with sign language. He has been living in Indiana and planning to move back close to me. We thought it would be longer before he was able to move but he was able to move permanently when he came for my surgery. While he’s been away, with every visit it was more noticeable that my right hand had declined and signing was more difficult. Without intention my left hand became the dominant hand I would sign with and my right started playing the left’s old role, just not as well. As days and weeks passed post surgery, I started noticing my right hand naturally taking over more. I didn’t say anything. Tyler mentioned it first. He said, “Mom, you’re signing with your right hand more and better.” I can’t put into words how this feels. It is the best gift to have this ability back for however long. No, it’s not pre-ALS better at this time, but a huge difference.

I want to say again, the last thing I want to do is give false information and hope about any results of my surgery, at the same time what I’ve said is true even though I have no idea of how long, and it hasn’t been proven through testing yet.

I so look forward to the day this is available to everyone. It can’t happen too soon!

Hello Olga, First I want to say I’m sorry you have ALS. I understand what it’s like having ALS and searching for information about any treatment and following the progress. I agree with you that my experience is of great value for all patients.
I say this to you, Olga, and all ALS patients. I want to share with you my experience more than you know. I think of it daily. I also feel it would be irresponsible of me to tell everything I’m experiencing only to have any part of it be wrong. The thought of giving false hope about any of it still concerns me. What to say or not say is a struggle with every blog. The holidays and other unexpected events not related to my progress have given me little time to write. I will have a new post very soon addressing this and my post surgery progress. Thank you, Olga. I wish you the best.

My name is Sandra and I have a son James who was recently diagnosed with ALS. Needless to say it has torn a gaping hole in our family’s heart and I am just starting to get a firm understanding of the disease. I found your website through researching new treatments coming out that could give James hope and will be checking back to your site often. Thank you for sharing your experiences with this illness and I am thrilled to hear that you may be progressing.

My heart goes out to you, James and your family. I remember so well all the emotions when this is all so new. The fear, the anger, the why? Hours of searching for something that may help. Overwhelmed reading about all the equipment that will at some point be needed. How will it progress? How fast? I wish I had some great words of wisdom to say that would ease these feelings for you. I won’t try to sugar-coat it. I know you already know better. It’s not an easy journey. I will say great things are happening in research now, the study I’m in and others. If you haven’t already, I highly recommend contacting the ALS association and get in contact with your local coordinator. There is support available where you will meet others who have been where you are now and can offer invaluable wisdom and support. Yes, your lives have changed forever, but please believe me when I say it doesn’t mean life is over. You and James are in my thoughts in this very difficult time.

So glad you are doing well. My last comment I wrote you are my hero and read your response. I’m sorry if it was offensive in any way-not my intension! I too have ALS and I know who the true heroes are. I’m 44 and my first symptoms were 6 years ago. This beast of a disease is awful and I find so much comfort in your blogs. Our lives are very similar. My husband is my main caregiver and he is so awesome. I wouldn’t still be here if it wasn’t for him. This wasn’t our plan! However, it has made us incredibly stronger as a couple. Our faith in God has grown so much. Thank you for going through all of this to help us all.

Hello Teresa,
There is no need to apologize at all. I wish my reply hadn’t made you feel that way. That certainly wasn’t my intention. I think being told I’m a hero is just so difficult for me because I don’t feel like I am. I feel more like I won the lottery. Nobody would call me a hero for that. I am learning to accept that and similar compliments a little more gracefully. I think I’ve mentioned in a post I feel what can be explained as a sort of guilt that I was one of so few to be given this great opportunity. I still sometimes can’t believe everything fell in place for me. So I want to thank you now for your compliment and I’m so glad you find comfort in in my blogs. That means a lot to me, especially when it comes from someone who truly knows ALS. I’m also glad you have an awesome husband there for you as I do. We do seem to share a lot in common. My husband and I have had some rough times in dealing with this and same as with you, it has ultimately strengthened our relationship. All of our plans took a long detour or were simply ended. Life is much different now but I have real hope for the future of ALS, something I didn’t have in the early days. I will have another blog out as soon as I can. I’m glad you sent this comment giving me the opportunity to clear up that you said nothing wrong. Take care and I wish you a very merry Christmas! April

Hi April,
Don’t ever feel guilty about being chosen. You put in a lot of work to be in this trial. Also don’t feel like you’re giving false hope. I will speak for myself…i don’t feel that any treatment will be ready soon enough to help me, but those of us living with ALS have some sort of obligation to future ALS patients to use ourselves as the test subjects. Anything we can learn now will be helpful to future generations! Thank you for getting involved and for publishing how you’re doing!!
Jim Fuller dx 4-2012

This comment from you really helped me while focusing on putting my feelings into perspective. As you, I’ve always felt there would be no treatment available in time to help me and also have always felt it my obligation to do everything I can to participate in studies to move research along so future ALS patients will have a treatment available. I’m not going to say I had no thought at all of any personal benefit from this stem cell study. I did think of it knowing about the phase I results but, much less than anyone would think. I know I still would have participated even if there were no positive results from phase I, safety trial. For so long my thoughts were focused on hoping the next of many tests wasn’t going to be the one to disqualify me from being in this study, and I knew if I made it, I had a difficult recovery ahead. The shock of noticing positive ALS changes, especially so early, has been overwhelming. I started becoming more hesitant about telling people. Post surgery has been nothing like I expected. It’s wonderful but in a strange way. That’s when guilt started setting in. I plan to get into this some in my next blog. This is why I haven’t blogged. I started to write saying I’m taking a break but didn’t. I needed a break. I will definitely blog very shortly after the new year. Then again don’t count out me doing it before then. Sometimes the need just hits me. Anyway, I wanted to thank you and let you know your comment hit home and was very helpful to me.
April

Jenni,
I do hope so. For a while now it has been focused on the stem cells but when I started the blog, I had no idea I would be given this great opportunity. I hope your Christmas was wonderful and 2014 is a great year for you!
April

Dear April, I had the necessity to express you my joy about your little progress with this Neurastelm trial. First of all, sorry if my written english is not good, I’m from Argentina and I’m trying my best. Your blog came across within one of many articles I received daily because I’m an stocks investor. Neurastelm is in my portfolio since I found out what they was doing with these new treatments, I was amazed and I was very interested in patients progress because I think nobody deserves this illness and until now almost any biotechnology company worked on it like on other very known diseases. Don’t get me wrong, I’m not a Jordan Belfort (last Leonardo Di Caprio’s movie about an insatiable stock broker), I really hope this company find a cure for this illness and I really hope you be the first of many patients in a positive progress. All the best for you, keep your mind strong, many people with or without ALS is following you!! Thank you, Liliana

Thank you for the kind words. You seem nothing like Jordan Belfort. I agree, nobody deserves this illness. I believe this Neuralstem study is leading the way in finding a treatment for this illness. Take care.
April

Hi! Caitlin and Sara here-
We are research techs in a lab that does ALS research. I’m not saying it’s Neuralstem, but I’m not saying it’s not… But we just wanted to wish you well, and we’re glad to hear things are improving! It’s people like you that continue to inspire us with what we do 🙂